Why ME/CFS is NOT an appropriate name

[Sammy1]

I had some thoughts about this recently that I want to share.

Lets take on ME first. First of all, as many have mentioned before, it's very difficult to pronounce and remember the name Myalgic Encephalomyelitis. This make ME a very stupid choice since cognition difficulties is one symptom of this illness.

Second of all, Myalgia, or muscle pain, is a symptom of many diseases and disorders so it's not specific enough. In addition, Myalgic Encephalomyelitis is often defined as inflammation of the central nervous system. Is there conclusive scientific evidence for this regarding ME/CFS? Last time I checked the cause of ME/CFS was still unknown. I'm diagnosed with ME/CFS and no doctor has told me that I have an inflammation of the central nervous system.

Third of all, ME can easily be confused with the pronoun "me". This is not a big problem but it can be annoying and frustrating in written communication.

When it comes to CFS I got only one thing to say: CFS is a symptom in many physical and psychological diseases and disorders. So it's a totally wrong name for our illness because it's not specific enough.

A good name would be a name that is easy to remember and pronounce. A name that don't claim any cause for the illness since the cause is still unknown. To give and example:

Let's say Dr Redford (fictional name) is an excellent ME/CFS doctor or scientist, a good name would then be:

Redford Syndrome. Then you link Redford Syndrome with the Canadian criteria and in an instant a lot of confusion would be eradicated.

I think this type of name would make our situation clearer and cause much less confusion.

 

[Sammy1]

First of all, as many have mentioned before, it's very difficult to pronounce and remember the name Myalgic Encephalomyelitis. This make ME a very stupid choice since cognition difficulties is one symptom of this illness.

I want to modify this part. There are no requirements that names for diseases or disorders have to be easy to remember and pronounce for patients but Myalgic Encephalomyelitis is difficult to pronounce for most people, even doctors. My doctor struggles with the pronunciation every time he tries to say the term so the name doesn't benefit anyone in that regard.

 

[SOC]

Over the past few decades, scientists (not being politicians or business people) have given up naming discoveries or developments after themselves or others because it is both immodest and confusing. Sure, plenty of historical names remain, but anything recent has a name that is descriptive of the discovery not the discoverer. Ramsey's disease would not be an acceptable name today. Neuroimmune [Something] would be more likely.

This naming convention does require that we know enough about the condition, of course. At present, what we know best about this illness is that all kinds of body systems are all fouled up in all kinds of unexpected ways. So my personal preferences for a current new name would be..... oh...... something like WTF Disease or SNAFU Syndrome.

 

[Purple]

My favoured term is "The Opposite Disease" - our bodies react opposite to what is expected to many things in many respects...

 

[Nielk]

I looked up how Lupus got it's name and found out that Lupus is the Latin for Wolf. The name was attributed by the 13th century clinician Rogerius who used it to describe the facial rash seen on patients which resemble a wolf's bite.

Based on this...what can we come up with?

 

[Seven7]

It should be call the pathema syndrome or Pasho Syndrome.

Just choose any language for suffering and we are good to go!!!!

 

[*GG*]

I had some thoughts about this recently that I want to share.

Lets take on ME first. First of all, as many have mentioned before, it's very difficult to pronounce and remember the name Myalgic Encephalomyelitis. This make ME a very stupid choice since cognition difficulties is one symptom of this illness.

Second of all, Myalgia, or muscle pain, is a symptom of many diseases and disorders so it's not specific enough. In addition, Myalgic Encephalomyelitis is often defined as inflammation of the central nervous system. Is there conclusive scientific evidence for this regarding ME/CFS? Last time I checked the cause of ME/CFS was still unknown. I'm diagnosed with ME/CFS and no doctor has told me that I have an inflammation of the central nervous system.

Third of all, ME can easily be confused with the pronoun "me". This is not a big problem but it can be annoying and frustrating in written communication.

I think this type of name would make our situation clearer and cause much less confusion.

1st. I think a difficult to pronounce name does not hurt, it probably gives it more credibility.

2nd I believe it has been reported that some autopsies have shown inflammation in the brain, when it is looked for. We all have inflammation in our body, it's not always visible, but it does have long and perhaps some short term consequences.

3rd. I believe if you write M.E., it should have periods after the letters to signify that it is an abbreviation. And the capital letters of both signify an abbreviation, if I was just talkiing about me or Me, that signifies different things to me.

GG

 

[ukxmrv]

The word malaria is Latin, and means “bad air.”
Not all disease names make sense or are accurate. They can reflect the understanding at that time


Poliomyelitis /poʊlioʊmaɪəlaɪtɪs/,
is hard to say as well. When ME was first described it was doing the rounds at the same time as Polio

We could all it after Dr Ramsay and there has been some call to do so

http://www.name-us.org/DefintionsPages/DefRamsay.htm

We know that "CFS" is wrong and have been saying so since it was introduced and when it was first mentioned. No one has paid any attention to patients. It is not an accident.

 

[Lotus97]

Fibromyalgia seems to be somewhat more accepted these days. It could be because of the name. Of course that also may be partially due to the pharmaceutical companies marketing drugs like Lyrica and Cymbalta to fibro patients. I'm not necessarily suggesting that we should all start saying we have fibromyalgia (although the symptoms lists are practically identical...)

 

[Sammy1]

something like WTF Disease or SNAFU Syndrome.

Best names so far. My brain told my body to laugh my ass off but my body replied that there is no energy for that.

My favoured term is "The Opposite Disease" - our bodies react opposite to what is expected to many things in many respects...

I know what you mean but we've come so far now and we know, for example, that PEM is waiting around the corner after excessive physical activity.

Based on this...what can we come up with?

My suggestion would be GECNBA Syndrome (good eye contact, no brain activity).

Just choose any language for suffering and we are good to go!!!!

Yes indeed, we do suffer tremendously but it would just be to general.

 

[Sammy1]

1st. I think a difficult to pronounce name does not hurt, it probably gives it more credibility.

I don't have any statistics but I don't think there is a correlation between difficulty and credibility. Cancer is an easy name and yet it has undoubted credibility. On the other hand most names have a medical term in latin that is difficult to pronounce so I guess we can both have what we want.

some autopsies have shown inflammation in the brain

It could be true that Encephalomyelitis is what causes our illness and all the symptoms that comes with it but at the moment it's just speculations, there is no conclusive evidence for this argument.

The word malaria is Latin, and means “bad air.”
Not all disease names make sense or are accurate. They can reflect the understanding at that time

I guess this explains why it's currently called ME/CFS.

We could all it after Dr Ramsay and there has been some call to do so

Definitely a good suggestion, as a memory to someone who contributed a lot in this field but as SOC mentioned earlier a descriptive name seems to be the trend/custom these days...maybe an exception can be made in this case

 

[Sammy1]

Fibromyalgia seems to be somewhat more accepted these days. It could be because of the name. Of course that also may be partially due to the pharmaceutical companies marketing drugs like Lyrica and Cymbalta to fibro patients. I'm not necessarily suggesting that we should all start saying we have fibromyalgia (although the symptoms lists are practically identical...)

I wouldn't be surprised if the mechanisms that cause M.E. are the same mechanisms that causes Fibromyalgia, Rheumatism and CFS.

 

[leela]

I've long thought it should just be called what it is:
Chronic Neuro-Immune Dysfunction

I mean, it's not glamourous, but it tells it like it is, most people can understand what it means, and it prohibits "helpful" commentaries like "my cousin got cured by exercising more."

Alternatively, one could get rid of the "chronic"--which scares most doctors away--and call it
Neuro-Immune Inflammatory Disorder or something.

 

[Sammy1]

I've long thought it should just be called what it is:
Chronic Neuro-Immune Dysfunction

I mean, it's not glamourous, but it tells it like it is, most people can understand what it means, and it prohibits "helpful" commentaries like "my cousin got cured by exercising more."

Alternatively, one could get rid of the "chronic"--which scares most doctors away--and call it
Neuro-Immune Inflammatory Disorder or something.

These names already exists as an umbrella name for a couple of diseases including CFS. M.E. would definitely qualify to be in this group but that wouldn't solve the name issue.

http://en.wikipedia.org/wiki/User:Djagnow/Neuro_Immune_Dysfunction_Syndromes
http://www.nids.net/

 

[heapsreal]

i think i prefer neuroimmune disorder as it can encompasses ME, MS and other yet discovered neuroimmune disorders or a spectrum of disorders.

 

[Snow Leopard]

I've actually proposed this before, I think I suggested Peterson's syndrome or Ramsay's disease etc.

In the absence of well defined aetiology, such names are more appropriate in my opinion. But few (who have influence) want to change the name to something like that.

 

[Nielk]

I think that we should just call it the MTD - Meetoo Disease. Because, every time we say that we are always exhausted; the reply is "me too".

 

[Sammy1]

I've actually proposed this before, I think I suggested Peterson's syndrome or Ramsay's disease etc.

In the absence of well defined aetiology, such names are more appropriate in my opinion. But few (who have influence) want to change the name to something like that.

I totally agree, in addition such names would distinguish our illness from all other diseases and disorders.

 

[Sammy1]

I think that we should just call it the MTD - Meetoo Disease. Because, every time we say that we are always exhausted; the reply is "me too".

You just wish they could have a taste of our exhaustion at those moments. Tell them to breathe through a straw next time, that would give them a glimpse of the difference.

 

[Enid]

Tough one - they have tried over years (I mean those in the know) - NEI - neurology, endocrinology, immunology once offered - in the meantime ME for me.